INFORMATION NEEDS OF AFRICAN AMERICAN CANCER PATIENTS

本研究旨在探讨随机抽样的250名非裔美国人和250名白色癌症患者及其家属的信息寻求、患者-提供者沟通、参与治疗决策和情绪调整。 将从医院肿瘤登记处确定受试者。 该研究部分重复并扩展了先前的一项研究，该研究探索了白色癌症患者的信息寻求和治疗参与（Manfredi，Czaja，Price，Ruis和Jansizewski，1993 a）。 这项研究扩展了以前的工作，探索种族，经济和心理社会预测的信息寻求。 非裔美国人和白色样本将根据患者特征进行匹配：年龄、性别、癌症部位（乳腺、结肠、前列腺）、自诊断以来的时间以及患者首次诊断或治疗的医院规模。 将通过电话访谈收集患者的数据，以确定：1）患者及其家属在诊断时和诊断后的信息需求和信息寻求活动; 2）患者-提供者关于护理决策的沟通; 3）参与治疗决策;（4）社会心理特征（包括SES）对上述三项的影响程度（教育和就业类型），保险范围类型，疾病相关因素，以及应对方式和资源; 5）患者是否寻求和接受第二意见或咨询，或提供或参与临床试验;以及6）患者对疾病的调整。本研究的具体目标是：1.为了修订、扩展和预测试先前对白色癌症患者进行的信息寻求研究中使用的问卷（Manfredi等人，1993年）。 扩展将包括增加经验证的心理测量工具，评估被认为会影响患者信息寻求的社会心理因素，以及评估种族对患者-提供者沟通等变量的潜在影响的新项目。 2.确定并采访随机抽取的250名非裔美国人和250名白色癌症患者，按癌症部位（乳腺癌、前列腺癌、结肠直肠癌）分层，并在诊断后的月数（3-6、7-10、11-14）、年龄组（小于或等于50岁、51-64岁、大于或等于65岁）、性别和诊断时的医院规模上进行匹配。 3.对上述数据进行分析。分析的主要重点是：a）描述非洲裔美国癌症患者的应对方式、患者-提供者沟通模式、信息需求、信息寻求活动、参与治疗决策以及对其疾病的情绪调整; B）将这些特征与白色癌症患者进行比较; c）探讨这些变量之间的相互作用模式，它们如何受到人口统计和疾病特征的影响;以及这些模式如何受到种族的影响; d）开发一种理论模型，该模型预测面临癌症诊断的个体之间的信息寻求、参与治疗决策过程和情绪调整，基于易感性、使能性，以及加强社会心理因素，同时考虑到人口统计和疾病变量的影响;以及e）评估种族和相关中介因素对上述模型的潜在影响。

A study is proposed to explore information seeking, patient- provider communication, participation in treatment decision making, and emotional adjustment of a random sample of 250 African American and 250 White cancer patients and their families. Subjects will be identified from hospital tumor registries. The study partially replicates and expands a previous study exploring information seeking and treatment participation of White cancer patients (Manfredi, Czaja, Price, Ruis, and Jansizewski, 1993a). The proposed study expands previous work by exploring racial, economic, and psychosocial predictors of information seeking. African American and White samples will be matched on patient characteristics: age, gender, cancer site (breast, colon, prostate), time since diagnosis, and size of hospital where the patient was first diagnosed or treated. Data will be collected through telephone interviews of the patients to determine: 1) the information needs and information-seeking activities of the patients and their families at the time of diagnosis and sine then; 2) patient-provider communication about care decisions; 3) participation in treatment decision making; 4) the extent to which the three items above are influenced by sociopsychological characteristics of the patient, including SES (education and type of employment), type of insurance coverage, disease related factors, and coping style and resources; 5) whether the patient sought and received a second opinion or consultation or was offered or participated in a clinical trial; and 6) the patient's adjustment to the disease. The specific goals of the study are to: 1. To revise, expand and pretest the questionnaire used in the previous study of information seeking with White cancer patients (Manfredi, et al., 1993). Expansion will include adding validated psychometric instruments assessing psychosocial factors thought to affect patient information seeking and new items to assess the potential impact of race on variables such a patient-provider communication. 2. To identify and interview a random sample of 250 African American and 250 White cancer patients, stratified by cancer site (breast, prostate, colon-rectum), and matched on months since diagnosis (3-6, 7-10, 11-14), age group (less than or equal to 50, 51-64, greater than or equal to 65), gender, and size of hospital at diagnosis. 3. To analyze the above data. The main focus of the analysis will be to: a) describe the coping styles, patient-provider communication patterns, informational needs, information-seeking activities, participation in treatment decision-making, and emotional adjustment to their disease of African-American cancer patients; b) compare these characteristics with those of White cancer patients; c) explore patterns of interactions among these variables, how they are influenced by demographic and illness characteristics; and how these patterns are affected by race; d) develop a theoretical model that predicts information-seeking, participation in treatment decision making process, and emotional adjustment among individuals facing a diagnosis of cancer, based on predisposing, enabling, and reinforcing socio-psychological factors taking into consideration the effect of demographic and illness variables; and e) assess the potential effect of race and related mediating factors on the above model.